Aidan has Minimal Change Disease Nephrotic Syndrome

While I was on vacation a couple of weeks ago I got a phone call saying that my grandson Aidan was at the doctor because he was having kidney problems. He was a healthy happy two and half year old and he had swelled up and put on 10 pounds of water weight. My heart sank. I don't want anything bad to happen to Aidan!

He saw a pediatric nephrologist (kidney specialist ) the next day and was diagnosed with nephrotic syndrome. His kidneys are leaking protein into his urine. Because the protein is being lost there is not enough protein in the blood which causes fluid to leak out of the blood vessels into the tissue and cause the swelling that Aidan experienced.

I've been doing a lot of reading on the web sites my daughter, Shannon pointed me towards. I've learned that Nephrotic syndrome can be caused by a number of diseases. They hope his is caused by Minimal Change Disease. The treatment is daily doses of the drug prednisone, a steroid. The best web site I have found so far in my reading is the Nephcure site. Minimal Change Disease Nephrotic Syndrome is fairly rare. The doctor told Shannon that most doctors will only see one or two cases in their careers. It mainly occurs in children between 1 and 5 and happens more often to boys than to girls. Apparently the steroids work for many kids but the chance of relapse is high. The good news is that most kids grow out of it by about 12. Because steroids suppress the immune system one of the many worries is that Aidan will be very prone to infections while he is on the prednisone.

I remember how horrible it was when my 9 year old daughter (Aidan's Aunt) was diagnosed with diabetes. You just don't want anything bad to happen to your kids. You want to protect them and a chronic disease that requires constant monitoring and vigilance is overwhelming and very scary. Aidan's Mom and Dad are trying to deal with this one day at a time. They have to test his urine for protein every morning. Of course that is not an easy thing in and of itself when you are dealing with a 2 year old who is still working on toilet training. Apparently prednisone tastes bad so getting it down him can be a struggle too. He will be on steroids for a while. If he goes into remission they will wean if off the steroids but will continue to test his urine daily. If he has a relapse he will go back on the steroids.

I get a knot in my stomach every time I start to read about all the bad things that could happen but I am really trying to think positive and not worry about things that haven't happened yet. I know that worrying doesn't help. But that doesn't help much.

I also know that my worry is nothing compared to what my daughter is going through. I know she is an amazingly smart, strong and determined person and she has a great network of supportive friends and family. Aidan will get through this. 

Comments

[Marion]

1.

Penny,
Aidan has done quite well avoiding major side effects. He just started kindergarten (public school) and so far has not had to be hospitalized. He gets hysterical whenever they approach the Kaiser hospital because he knows he is going to have his blood drawn. My daughter is very happy with the pediatric nephrologist that he sees at Kaiser. His immune system seems to be OK but my daughter is very careful whenever he gets even a sniffle. And of course we all worry. Aidan is 5 now. I wonder at what age he will get better.
Marion

[Penny]

2.

Hello, Marion. I hope your grandson is doing well. My son was diagnosed with MCD about 7 months ago. We have dealt with steroid side effects for SO long and had 2 relapses. I think we will be using cytoxan after his nephrologist apt next week. I am very worried. It is so nice to find these comments of other family members who have gone thru this with their children/grandchildren. I am interested to know how all these children are doing. It is such a worrisome thing to deal with. How is he doing in pre-school? Is he in public school? How is his immune system? Thanks for sharing your experience.
Wesley's Mamma

[Marion]

3.

Vanessa, Good luck to you and your son! My grandson is doing quite well considering..... He is still on predizone therapy but he has avoided complications so far. He just started pre-school.
Marion

[Vanessa]

4.

How is your grandson doing now? My son was just diagnosed today.

[Vanessa]

5.

How is your son doing now? My son was just diagnosed today.

[Marion Vermazen]

6.

Dawn, Thank you so much for sharing your experiences. It helps to hear what others are doing to deal with the disease. The nutrition and allergy angle is an interesting one.

My daughter has found Nephcure at http://Nephcure.org really helpful. She and Bill went to some of the training and have met others who are dealing with the same issues.

[Dawn]

7.

My son was also diagnosed with NS at 2-1/2 yo. He has been on predizone therapy for 6 years now as he has become steroid dependant. If he goes off the drug, he starts to spill.

We did the cyclophosphomide treatment 3 years ago with absolutely no change. It was pure hell getting the bottle out of the bag with a skull with cross bones on it and realizing I had to give this to my son. I was very hopeful it would help.

We experienced relief when we started him on a nutritional supplemnt. He had been unresponsive to the prednisone, which was very scary, gave him the liquid nutrition and his numbers improved within 12 hours. So nutrition matters...at least to our son. Also we have noticed a correlation with his allergies. He was tested and found to be allergic to most all weeds and grass in our our state (Utah) and we definately see epidodes increasing during allergy season. We are going to start him on allergy treatment as soon as we can afford to do so. I believe wholeheartedly that he would do better if allergies were no longer a struggle. My son's neuphrologist acknowledged that nutrition and allergy link are both viable.

We are very fortunate that our son has no bone loss after all these years and the only side effects he has are the increased moods when he is on a high dose. I would just love to see him get off the steroids because of the possible long term side effects and am open to any medical or alternative options that have worked for others. I am hopeful that he will in fact outgrow the disease and look forward to the day when I don't look at him and see swelling and feel the sinking feeling of ... here we go again.

I appreciate finding this site today as realizing I am not alone in my struggle.

[Heather]

8.

Nephrotic Syndrome was once known as Bright's Disease a long time ago.
Heather

[Heather]

9.

NIH, National Inst. of Health in Bethesda, MD is doing a long term study on this disease. My son and I have already signed on and traveled to MD for the study. It is no experimental drugs and it is also science and medicine at a level unseen by most. They cover all expenses... travel by plane or car and put you up in a very germ free enviroment for the childrens sake. If you would like more info you can contact me at 864-624-9566. WE SIMPLY LOVE the doctors and the openness shared.

We have been to Emory in Atl, GA and 5 others but have found the openness of NIH totally refreshing and very full of information. My son has had his disease since age 4 years old, he is now 11.5 years old.
It is understood by an Infectious disease doc and 2 ped. nephs that he is a rare case of over-vaccinated induced disease.

I am truly sorry for any family that has to endure this "WILD CARD" disease. It is such a challenge due to the lack of info and knowlege out there ... often I feel as if I know as much as the doctors. But, NIH and Nephcure are doing AMAZING things and have made much progress within their 10-11 years of advocating and researching & fundraising $$$

Thinking of you and your family as you travel this hard road.
Heather

Sincerely-
Heather

[lorraine hammond]

10.

My little boy liam has nephrotic syndrome. He was diagnosed early june 2003 he has had a biopsy which showed he had normal kidneys he has had genetic test which confirmed it wasn't genetic liam had great year all of a sudden liam has taken a relapse which no one knows why it is so hard watching a 6 year old boy spending so much time in pain and in hospital he is on a number of different medicines he has domperione furosemide calcciferol magasorg enlarappril.. liam was treated with steriods and cyclosporin he retains fluid then goes into hospital for albumin it is a very difficult time

[Debora]

11.

Hi Marion - what your Grandson is going through seems to be just what my son has gone through. He was first diagnosed with Nephrotic Syndome at 2 and a half. He was on prednisalone for nearly a year - almost coming off, then having another relapse. We eventually took the difficult decision to let him go on cyclophosphomide (the same as citoxin I think). This has helped him, although he still has relapses when he is tired, run down or has a temperature. He is now 6 and we realise it's just something we've got to get on with for the next few years. Interestingly, my husband (his father) also had Nephrotic Syndrome as a child. It was almost unheard of then (early 70s). I think this really helped us get through the tough bits. Hang in there - at least he should grow out of it at some point and they can do something for him. Re the nasty taste - we use soluable prednisalone or my husband always said he took his with milk - makes them stick to your mouth less!

[Marion]

12.

Jake's Dad,
I talked to my daughter about your interesting comment. Thanks for the suggestions. Currently my grandson is still on the prednisone and also on Citoxin another powerful immune suppressant drug that is often used in cancer therapy. The hope is that this will allow him to get off the prednisone which he has been on for almost a year now. It is probably good that Aidan is not in school yet. He is exposed to fewer germs and diseases and the side effects have been manageable.

The bad taste of the drug is something he has learned to deal with. We are hopeful he will be off all the drugs by the end of March.
Marion

[Jake's Dad]

13.

My son is 4 and has been dealing with Nephrotic Syndrome for 4 months now and I feel for your daughter.
The disease is bad of course, but the prednisilone therapy makes our son wild and out of control. Because of the immunosuppressed state that the steroids can deliver we have had to keep him home from school alot and it's difficult to keep asking family to keep him since he is such a handful and can be destructive too.
As far as the bad taste, I'm sure you have already found this drug called verapred or orapred, it dissolves in the mouth and has a grape flavor. Before, we were administering a nasty tasting liquid that effectively induced vomiting and abruptly halted his therapy resulting in relapse and another hospital stay to get rid of the fluid. Our son has no problem chewing this flavored medicine now.

[Mommaofmany]

14.

My son has NS. He has very minimal relapse since I began treating him naturally, with garlic. You can read about how I treat him here: http://www.homeschoolblogger.com/Mommaofmany/610135/ It works really well (though not ALWAYS), and I love to share the idea with others, as they confront this disease. Jack has relapsed just once a year since I found this treatment. He's nearly eight now.

[Kristen Hendrickson]

15.

Hello,

You might be interested in learning more about Minimal Change Disease at the UNC Kidney Center web site.

The Kidney Center just posted new educational podcasts on MCD which you can listen to on your computer.

http://www.unckidneycenter.org/kidneyhealthlibrary/podcast_minimalchange.html

Hope you find it helpful.

Thanks,
Kristen

[Shannon]

16.

http://walk.kidney.org/goto/Shannonswalk I am doing a walk for the national kidney Foundation June 6. Anyone who would like to sponsor me to help find kidney disease can click on this link...I believe in shameless plugs.